Friday, September 22, 2006

Neutral Words Glossary

The use of medicalized language to describe autism is an issue that often comes up on the neurodiversity blogs. Several people have written that they would prefer to avoid such language, but they sometimes feel stuck with it because they can't think of a good way to work around it while they are writing a post.

So, at the risk of making myself look like the Hub's arbiter of political correctness, I've decided to put together a list of common medical terms used in relation to autism and some alternatives to them. I hope they will be useful. Please feel free to comment and to suggest additional terms; I'll be updating this list.

Abnormality

Rare traitDifferenceVariationOutside the average range

Co-morbidities

Co-occurring conditionsCo-existing conditionsConcomitant with autism

Diagnosis

IdentificationClassificationCategorizationAssessmentDiscovery

Disorder (or deficit or disease)

ConditionDifferenceVariationDiversity

Improvement (when used to describe less autistic behavior)

Adapting to cultural expectationsDeveloping different skills

Intervention (or Early Intervention)

EducationTeachingEarly childhood program

Normal or healthy (when used as opposite of autistic)

Non-autisticAverage (as to a particular characteristic)Neurological majority populationNeurotypical (although I don't like this one, it's better than "normal")Pathological findingsDocumentation of differencesAssessment of characteristics

"Red flags"

IndicatorsSignsCommon autistic behaviors in early childhood

Risk factor

Possible contributing factorFactor that increases the probabilitySeverely autistic (or low functioning)Non-speaking autisticAutistic person with self-care difficulties(by the way, one does not necessarily imply the other)

IdentificationClassificationCategorizationDiscovery (see this essay by Carol Gray and Tony Attwood)"

This bit, from the point of view of a non-clinical applied psychologist, feels a bit weird. I do diagnoses, but I don't do them in the strict clinical sense: I diagnose *situations that bring about difficulties* rather than *disorders*, and I get very specific about it when I do it. Diagnosis, as a word, isn't strictly a medicalising term (although the common usage tends to be medical-ish). Electrical and electronics technicians make diagnoses; in fact, any professional involved in analysing any system in order to find out what situation has come about that causes difficulties makes diagnoses.

The 'discovery' thing (Attwood and Gray) feels, to be honest, a bit patronising. When I was younger, as an obviously autistic child in an untenable position in school, I didn't need to be discovered. Nor did I need any personal disorder diagnosing. But I did need a situation to be diagnosed, and situations can only be diagnosed after a multi-level analysis (which is pretty apparent from the findings in my MEd thesis).

I like the idea of an alternative glossary of terms though. This goes back to the introduction of my thesis: autistic people should be referred to by terms determined by the autistic people ourselves. I'll try to think of some alternatives myself... I've developed many over the past while that I've been working as a psychologist and doing my studies.

Co-morbidities, as it's actually used, does not necessarily mean anything about whether specific conditions are commonly found among autistic people. It just refers to an autistic person with another condition.

So, for instance, even if dwarfism were not associated with autism in any way (actually some forms of autism are associated with some forms of dwarfism, but I'll ignore that for now) it could end up being called a "co-morbidity" if it happens in an autistic person. (Which would probably piss off a lot of dwarfs too, since most of them don't consider being short a disease either.) Even if there's no statistical association at all.

So it'd be more like, "another condition". No causal association of any kind with autism necessarily, not even any statistical association with autism. All that stuff about often and statistically common makes it sound like those things have some such association to autism, and quite often there is none at all, so that doesn't make sense.

As far as improvement, I don't think that word can be just so easily glossed to development or learning. The problem is that many people use improvement to mean appearing more NT, which may not be development or learning at all.

Thanks abfhThis is very helpful. I need more ideas like this. I cant see how there could ever be too much written about how to find more respectful ways to see and encourage people with autism. We are certainly nowhere near that point now. There are alot of things about computers that I dont know yet. Seaching for google blogs with the word neurodiversity in them is one of my main sources of finding respectful ways of describing autism. There may be others like me who use this as their main source.I really appreciate the risks that you and others take and I hope more people are encouraged to write blogs using the word neurodiversity in them.Thanks, Ed

"Assessment" can be a useful replacement for "diagnosis"; in particular, it has connotations of a description of what somebody's like in the present rather than a prediction of that person's future. It also implies "making a list of his/her needs" (positive) rather than "what's wrong with him/her" (negative).

"Improvement" is, IMHO, completely fine when applied to a specific area in which a person has been having trouble, e.g. "his self-control has improved." It's illegitimate when applied to the person ("he's shown a lot of improvement") or to his/her overall condition ("her autism is improving").

Joseph: "Pathological findings" and "risk factor" are good additions to the list. I'm not sure if "improvement" belongs in the list or not, because as ebohlman pointed out, it often refers to improvement of skills, which is OK. (I'll ponder that one a bit longer.) Cure and the superior/inferior dichotomy involve so many complex social concepts that I'm not sure what substituting another word would accomplish.

As for epidemiology, I wish I could think of a good way to get rid of that one! It ought to be demographic studies, or ethnology, or something like that, but that's not accurate because it is in fact being done by epidemiologists. Grrrr.

David: I'd like to think that when Attwood wrote that essay, he was trying to atone for his sins in popularizing Asperger's and thus creating a new category of modern-day lepers. But you may be right that he is just being patronizing. Anyway, "discovery" can reasonably be substituted for diagnosis in some sentences, such as, "the parents discovered that their son was autistic when he was three years old."

ABFH: "I'd like to think that when Attwood wrote that essay, he was trying to atone for his sins in popularizing Asperger's and thus creating a new category of modern-day lepers. But you may be right that he is just being patronizing."

I'd like to think so too, but some time ago, I was made aware of a technique for conducting an assessment on someone without their consent (I think it was on Michelle Dawson's TMOB board), and - like many of us - I was somewhat disappointed in him on that one.

FFIW, I don't think that it's an intentional attitude (per se), but I do think that it is something that comes about when one is trained as a clinical psychologist within a medical model (in fact, this is one of the things that warmed me somewhat to James because he, as a clinical psychologist, actually actively looks at things outside the typical medical model).

Regarding what ebohlman says on the topic of assessment v. diagnosis... the terms do actually have different meanings in professional practice, and it isn't really a good idea to substitute one for the other: the one leads to the other, in fact.

However, I'd like to - if I may - try to refine what was said in that post, because there is some merit to the notion of diagnosis being a process of recognising *needs* as opposed to *symptoms* (as one would go by in a clinical situation). In theory at least, this is what diagnosis is about in educational psychology: the identification of special educational needs. When I do it, I identify "... needs which are usually experienced by those with a clinical diagnosis of X", and then try to suggest ways of working that would reduce those needs by fitting client to learning environment *or* by modifying the curriculum in order to eliminate a given 'special educational need' from the list given (e.g., by suggesting that a quiet room be allowed for a highly anxious person, who gets distracted easily by his/her emotions and by noises to which they are particularly sensitive, as I am in the process of doing with one or two clients just now). Psychodiagnosis based on a symptomatology is the influence of the medical model in clinical psychology, and has very little actual use in educational settings.

Re: improvement, I mean something like "His social skills have improved."

Which ends up being, "He looks people in the eye more often, doesn't flap his hands, no longer discusses or does what's interesting to him, and puts up with a lot of crap instead of saying something about it" or something.

Firstly, this is a great blog. Very interesting and this post about use of language is so crucial to all people, regardless of their impairment, being treated as an equal citizen.I was slightly perturbed about the use of the word 'assimilation'. Surely that's what we're trying to get away from - this idea that disabled people have to fit into society. Society needs to be to flexible and evolving, in order to accomodate all its citizens' requirements.

Hi Robert. When I used the word "assimilation," I didn't intend any value judgment on how flexible society ought to be. In history and sociology, "assimilation" is a neutral term referring to minorities becoming part of the mainstream culture. The minority group has to adapt to some of the majority's cultural expectations, but the social behavior of the majority also changes to some extent because of the new group's presence and influence.

You're probably right that I ought to delete it, though; the word has some less desirable connotations, from mistreatment of immigrants to Star Trek's Borg. I'll go ahead and remove it from the list. Thanks for your input.

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This blog began its journey in May 2005, countering misinformation and stereotypes about autism. The title was chosen to make clear that autistic people are not changelings or aliens, but are human beings who have just as much right to inhabit Planet Earth as anyone else.
Now, as it reaches the end of its five-year mission, I would like to thank my readers and everyone who is working toward understanding and acceptance. May you find blessings wherever you go.
— abfh, May 31, 2010